May is Cystic Fibrosis Awareness Month and as the parent of a child with CF, I spend many hours learning, talking and writing about the condition. As I write this, a family is making funeral arrangements for their 12-year-old daughter who recently died from CF. As devastating and as common (the most common genetic disorder in the United States) as CF is, many people have never heard of it.

Know What to Look For

Lucky for us, and thousands of other families, every state is now testing children at birth for CF through newborn screening. As with most conditions, the earlier your child is diagnosed with CF, the better her prognosis is. However, there are children out there who weren't screened at birth and are still suffering, undiagnosed. Plus, there is a 5% chance of receiving a false negative when testing at birth for CF. Know the Symptoms of Cystic Fibrosis to make sure that the children you know and love don't slip through the diagnostic cracks.

Educate Yourself

Even if you've heard of CF, and think you know enough about it, there is always something to learn. Even as a CF parent, I am constantly educating myself on the effects CF has on my daughter's body and what to expect as she ages. Find out 10 Things You Don't Know About Cystic Fibrosis.

Making the Best of It

Treatment time in our house can sometimes be a struggle. Fighting CF is constant, and treatments take at least an hour of my daughter's time every day. We've had to come up with a variety of Ways to Make Treatment Time Fun in order to ensure she gets through each treatment and stays healthy.

The All-You-Can-Eat Diet

People with CF have a difficult time absorbing nutrients; therefore, they must eat a high fat, high calorie, high salt diet. Sounds great, right? But it can be difficult to consume up to 5,000 calories a day. My daughter must consume more than 25% of the daily-recommended caloric intake of children her age. But you can't make a kid eat. These High Calorie Snacks for Low Weight Kids help us get in the necessary calories.

Run, Jump, Play

We all need exercise to stay healthy, but for someone with CF, not exercising could mean an early death. It's tough to Keep Your Toddler Active Indoors, especially when you live in northern New England as we do. Making activity a part of our everyday is important to help our CF daughter live a longer life.